• Home
  • Helpful Resources
  • Reading List
  • Recommended Blogs
  • Marilyn’s Legacy: A World Without Alzheimer’s
  • About Me
  • Contact Me

The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Advocacy and Awareness

Alzheimer’s & Gratitude: A Matter of Perspective

15 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, alzheimer's & brain awareness month, Blogging, Caregivers, Expectations, Grieving, Helpful Resources, Inspiration, Life After Caregiving, Marilyn's Legacy, Mom, Ruminations, Smiles

≈ 5 Comments

Tags

alzheimer's & brain awareness month, alzheimers, alzheimers gratitude, caregiver grief, caregivers, dementia, gratitude

gllogoJune is Alzheimer’s & Brain Awareness Month in the United States, and I’m grateful to my new friends at the worldwide Network for Grateful Living for helping shine the spotlight on Alzheimer’s!

After being introduced to their site, I was inspired to write a piece about Alzheimer’s and gratitude, two things we don’t necessarily see as going hand in hand. We know this disease brings with it pain and sorrow, shattered dreams, and disappointments over lost opportunities. We mourn uniquely beautiful lives cut short, and we struggle to say goodbye to what could (and should) have been. It’s a journey none of us would choose.

However, like anything in life, perspective matters. Some days, I could easily curl up in a blanket and sob for hours about how unfair it is that I began to lose pieces of my mom before I was out of my 30’s. Even as I write these words, I feel tears well up in my eyes.

Yet Alzheimer’s also made me a more compassionate person. It opened my eyes in many ways – to life’s most simple pleasures, to the fact that my story might actually help others, and to the idea that I had talents and abilities that had gone untapped and might be valued in venues I had never considered.

sunset-over-mountainsLiving through the experience reminded me that my time on earth is limited and there’s no time like the present. It made me sweat the small stuff a bit less. It even made me realize I could leave behind a very comfortable 27-year career with a Fortune 100 company to work for a much smaller non-profit with a strong mission and values I believed in.

Of course, I would trade every last one of those things to have my mom back. Of course I would. But having her back in this life isn’t an option, so I the best way I can honor her is to go on and live the best life I can. The best way I can keep her spirit alive is to do what I now feel is my life’s work, which includes the recent launch of a registered 501(c)(3) non-profit organization, Marilyn’s Legacy: A World Without Alzheimer’s.

I wish I’d grasped the idea of Alzheimer’s and gratitude much earlier in our journey, but I guess that’s what growth is all about. Fortunately, with time, experience, plenty of soul searching – and an ocean of tears – it came while she was still alive. The piece I wrote for Gratefulness.org is all about what a blessing that was. I hope you’ll take  few minutes to visit the site to read and share Alzheimer’s Taught Me to be Grateful.
bd
Bookmark the site and check them out on Facebook as well. Be sure to read about Brother David and the fascinating life he led before co-founding the Network for Grateful Living. This has become one of my favorite places for daily inspiration!

 

 

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...

June is Alzheimer’s & Brain Awareness Month

01 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, alzheimer's & brain awareness month, Caregivers, Cure Alzheimer's Fund, Fundraising, Help Stamp Out Alzheimer's, Helpful Resources, Life After Caregiving, Support system, USAgainstAlzheimer's, Volunteering, Washington

≈ Leave a comment

Tags

#endalz, alzheimer's & brain awareness month, alzheimers, Alzheimers advocacy, alzheimers awareness, dementia

June is upon us, and with the month of the summer solstice comes Alzheimer’s & Brain Awareness Month! It’s the perfect time to get involved in the fight to end this horrific disease, and here are a few ways to do just that.

 

Know the Facts

Learn about Alzheimer’s and then help educate others!

  • Dementia is an umbrella term for a variety of symptoms that may accompany or indicate certain diseases or conditions. Alzheimer’s is a type of dementia. Other types include Lewy body dementia, frontotemporal dementia, vascular dementia, and mixed dementia.
  • Memory loss is just one aspect of Alzheimer’s. The disease also results in problems with executive function, spacial relationships, communication, and judgment. Other symptoms include anxiety, withdrawal, apathy, depression, agitation, paranoia, hallucinations, and delusions.
  • Every 66 seconds, an American develops Alzheimer’s disease.
  • 4 million Americans are living with Alzheimer’s. Of those, at least 200,000 are under age 65.
  • Alzheimer’s takes more lives than breast cancer and prostate cancer combined, yet research is still grossly underfunded.
  • Alzheimer’s is the 6th leading cause of death in the U.S. and the only one that cannot be prevented, cured, or even slowed.
  • In 2015, 15.9 million family and friends provided an estimated 18.1 billion hours of unpaid care for those with Alzheimer’s and other dementias.

Volunteer Your Time

photo-63Give of your time! Contact your local Alzheimer’s Association chapter to find out how you can get involved. If that isn’t in your wheelhouse, reach out to a nearby memory care community. I promise that what you give will come back to you tenfold (and then some!) every single time. No special talents needed. If you’re capable of sitting and holding someone’s hand, you’re qualified!!

Let Your Voice Be Heard

Add your voice to the growing movement calling for an Alzheimer’s semipostal (fundraising) stamp. Take just a moment to encourage the Postmaster General to move forward with a stamp that could raise millions of dollars for Alzheimer’s disease research. The breast cancer stamp has raised over $83 million since its inception! Click the following link to add your encouragement: https://www.uspsoig.gov/blog/putting-stamp-good-causes

You can also reach out to your elected officials, asking them to support increased funding for Alzheimer’s. Consider writing or calling to share your personal story; there’s no better way to underscore just how important an issue is than to put a human face on it. You have the power to do that. If you aren’t sure how to reach your officials, these sites will help:

  • United States House of Representatives
  • United States Senate

Reach Out

Do you know someone caring for a loved one who has Alzheimer’s or another form of dementia? Bring them dinner or offer to provide a couple of hours of respite care so they can have a break to do something they enjoy. Drop off some fresh cut flowers or mow their yard. Small acts of kindness go a long way in letting someone know they aren’t alone.

Likewise, if you have a friend or family member living with dementia, please take time to visit them – no matter what stage they are in. Remember that these are living, breathing human beings who need human contact and love as much as you and I. Even if they can’t communicate, they will feel your energy; even if they don’t recognize you, they will relish the company.

Make a Monetary Contribution

250x126-whiteMarilyn’s Legacy: A World Without Alzheimer’s is a registered 501(c)(3) non-profit organization dedicated to ending Alzheimer’s and supporting and advocating for family caregivers. Marilyn’s Legacy was borne of a desire to honor my mom’s life and ensure that her battle with this disease was not in vain.

We are partnering with UsAgainstAlzheimer’s and the Cure Alzheimer’s Fund, two non-profits that are recognized leaders in this space. It is very important to us that every dollar raised goes directly to the mission rather than salaries and other operational expenses. The founders of UsAgainstAlzheimer’s and the board of directors of the Cure Alzheimer’s Fund cover every dime of overhead ensuring that 100% of your contribution furthers the fight to END ALZHEIMER’S! When you support Marilyn’s Legacy, you can feel confident that the funds donated are being spent wisely.

To make a tax-deductible contribution, visit our donation page.

Join the Brain Health Registry

The Brain Health Registry is an easy way to contribute to research from the comfort of your home. Participants sign up on a website and complete several questionnaires regarding medical history, lifestyle, and current health.

Once the questionnaires are finished, participants are invited to complete a series of tests that might be likened to brain games. Each activity takes just a few minutes. At 3-6 month intervals, registry members receive email reminders to come back and complete additional activities. The hope is that people will continue to be involved for many years, as the longevity of participation helps researchers understand how our brains change over time.

The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants in this fashion, the right people can be assigned to studies faster, ultimately accelerating trials.

To join the Brain Health Registry, visit: http://www.brainhealthregistry.org/

Share This Post

Last but not least, share this post. Shout your message from the rooftops! Encourage your personal network to help #endalz! Remember that our collective voice is bold, powerful, and impossible to ignore. Together we can move our agenda forward and realize a world without Alzheimer’s!

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...

Update: Will Ferrell – Comedic Depiction of Reagan with Alzheimer’s in Poor Taste

29 Friday Apr 2016

Posted by Ann Napoletan in Advocacy and Awareness, Ruminations

≈ 8 Comments

Tags

alzheimers, dementia, ronald reagan, will ferrell, will ferrell movie

me and mom

-Reality

Update:  One day after this news broke, amid outrage from the Reagan family and the Alzheimer’s community as a whole, Will Ferrell has pulled out of the film.

While I’m very thankful for this, the entire situation is indicative of a much larger issue. The events of the past two days illustrate there is a widespread misconception about exactly what Alzheimer’s is and what the disease does to everyone it touches. The fact that a comedic storyline of this nature was conceived of and a production company took on the project remains a travesty.

It’s a powerful reminder that we, as advocates, must remain tenacious as we go forward to educate the public about all forms of dementia. Perhaps Mr. Ferrell will now join us on that mission.

I am encouraged by the fact that over the past 24 hours, the outcry of thousands was heard loud and clear. It is my hope that at the end of the day, the media attention this yielded will help further our goal of bringing Alzheimer’s out of the shadows.

Patti Davis wrote an eloquent update to her earlier open letter, which you can find on her website, and my friend and fellow advocate, Mike Belleville, has started a petition calling for the script to be destroyed. As a 55-year-old living with younger onset Alzheimer’s disease, Mike has rather strong feelings on the matter. Please sign the petition and share widely on social media, asking others to do the same.

Fondly,
Ann


I haven’t been writing much due to lack of time and inspiration. However, upon reading about Will Ferrell’s upcoming film, Reagan, I find myself spurred by the asinine notion that Alzheimer’s disease provides an acceptable comedic storyline.

For those who haven’t heard, Ferrell will portray Ronald Reagan “in the throes of Alzheimer’s”[1] for a comedy feature he is also producing.

Clearly Mr. Ferrell has not watched helplessly as his mother literally lost her mind before his eyes over a long, slow, painful decade. He has not swapped roles with a strong, beautiful, independent woman in her mid-60’s, becoming her parent as she became a child again. He doesn’t know what it’s like to see the person who was always his rock suddenly need help with even the most intimate, personal activities of daily living.

I doubt Will Ferrell has had to take his mother’s car keys when it was no longer safe for her to drive or tell her she would have to leave her home because that, too, had become unsafe. He hasn’t received a phone call on a snowy, sub-zero winter night, and heard the voice on the other end of the phone tell him his mother has eloped and was found wandering up the middle of a busy street in the dark.

The actor hasn’t desperately tried to calm his mother when she screamed for hours on end, unable to explain what was wrong because she could no longer communicate verbally. Will Farrell has never stood by as his mother accused him of stealing from her because the paranoia that comes with Alzheimer’s had turned him into an enemy. Nor do I imagine he has watched as she was terrorized by the hallucinations that also accompany dementia.

Mr. Ferrell hasn’t fed his mother when she could no longer feed herself. He hasn’t seen the emptiness in her eyes as she blankly stares off into space, oblivious to her surroundings. He doesn’t have particularly poignant milestones indelibly etched in his mind – like the moment he realized his mother no longer remembered how to put on a pair of pants. And, he probably doesn’t know what it’s like when friends and family stop visiting because they “can’t handle seeing her like that.”

He hasn’t listened to his mother beg over and over again to “go home” or watched tears stream down her face when she’s having a moment of clarity and knows darn well something is terribly wrong. He hasn’t heard his otherwise non-verbal mother suddenly cry out, “HELP ME” or “I WANT TO DIE.”

God willing, Will Ferrell will never have to give his mother morphine to keep her calm and comfortable until the hospice nurse arrives in the middle of the night. And he won’t be forced to watch as Alzheimer’s ultimately kills her.

The experiences [2] I’ve mentioned in this piece provide a tiny glimpse into what it’s like to lose someone to this horrific disease. Believe me, what you’ve read is the sanitized version of reality. I saw a headline earlier this evening that asked, “Can Will Ferrell Make Alzheimer’s Funny?” I’ll let you be the judge.

Patti Davis, daughter of Ronald Reagan, has released an open letter to Will Ferrell. I hope you’ll take a moment to visit her website to read it. If you are as outraged as many of us, please share Ms. Davis’ letter widely. 

[1] Patti Davis, An Open Letter to Will Ferrell, 04.28.16. http://booksbypattidavis.com/an-open-letter-to-will-ferrell/

[2] This is but a small sample of actual experiences I (and millions of other family caregivers ) have lived. 

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...
← Older posts
Newer posts →
© Copyright 2025
All Rights Reserved
The Long and Winding Road

Marilyn, BA (before Alzheimer's)

Contributor

Contributor

Recent Posts

  • The Latest Alzheimer’s Research Developments
  • National Caregivers’ Day: February 21, 2025
  • June 7, 2021: A Historic Day
  • UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!
  • Happy 84th Birthday, Mom.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 443 other subscribers

Archives

Blog Directory & Business Pages at OnToplist.com

Blog Stats

  • 144,782 hits

Meta

  • Create account
  • Log in
  • Entries feed
  • Comments feed
  • WordPress.com
stats for wordpress

Categories

Popular Posts

  • About Me
  • Thank you!
  • A Special Bond
  • Monday ... on Caregivers
  • Telling the Story
  • Hiding In the Canned Goods Aisle...and Other Stuff
  • Walking a mile in his shoes...
  • CGSN: Focus on YOU!
  • Look for me on VoiceQuilt!
  • Caregiving: Imperfections, Weaknesses, Acceptance, and Forgiveness

Recent Comments

  • Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s | The Long and Winding Road… (alzjourney.com) | Ann Campanella on Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s
  • Betty Trimble on Film Review: Angel’s Perch
  • Carol on Caregiver PTSD: Fact or Fiction?
  • (3) Ritamae Reichardt on When Caring Takes Courage: A MUST HAVE Caregiving Guide
  • Mary Jo George on June 7, 2021: A Historic Day

Pages

  • 2013-2014 News Archive
  • Helpful Resources
  • Latest News & Events
  • Postmaster General Letter – Alzheimer’s Semipostal
  • R E S I S T Resources
  • Reading List
  • Recommended Blogs
  • About Me
  • Contact Me
Coming Soon!
Marilyn's Legacy: A World Without Alzheimer's, Inc.
Stay tuned!!

Blog at WordPress.com.

  • Subscribe Subscribed
    • The Long and Winding Road...
    • Join 443 other subscribers
    • Already have a WordPress.com account? Log in now.
    • The Long and Winding Road...
    • Subscribe Subscribed
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d